Was just prescribed both Tenofovir alafenamide and Tenofovir disoproxil

[cfs since 1998]

Hi @Gzephyr thanks for all of your posts sharing your progress. I also have to stay on valtrex or symptoms come back, although take about 3 days for me instead of the same day.

I tried TAF a while back, but I couldn't tolerate it, even at a greatly reduced dose. I think (although I can't be 100% sure), that the issue for me was medication side effects and not the immune flair one can get when starting an antiviral. When I started valtrex I had a noticeable flair, followed by resolution of some symptoms. This felt different. Anyhow, do let us know how you are getting along with it.

Hi Shanti1, can you tell us what side effects you had with TAF and what dosage you used?
Thanks.

 

[Shanti1]

Hi Shanti1, can you tell us what side effects you had with TAF and what dosage you used?
Thanks.

Increased fatigue, hyperacusis, hypersomnolence, orthostatic hypotension, and irritability (I was looking back at my notes and I described it as psychotically wrathful!). Also had flank soreness, maybe kidney, but I never did a chem-screen.

I found I was having trouble with even a quarter tab, so I ended up dissolving tabs in a bottle such that a quarter tsp will gave me 2mg. Had side effects even at 1mg, which is probably way below the therapeutic threshold.

I have been on valacyclovir 1g bid to tid for over two years now with no side effects that lasted beyond the first couple of months.

 

[Gzephyr]

@Gzephyr How are you doing with your QoL and PEM? Hopefully keeping an eye on kidney/liver if you are TAF+3g Valtrex

Had both the flu+RSV at the same time over the last 10 days so I haven't been able to tell where my progress is. I'm finally getting over it so I'll update you guys when I can have an idea where I stand once the sickness is 100% gone.

Getting my liver and kidney labs done once a month!

 

[Gzephyr]

Hi @Gzephyr thanks for all of your posts sharing your progress. I also have to stay on valtrex or symptoms come back, although take about 3 days for me instead of the same day.

I tried TAF a while back, but I couldn't tolerate it, even at a greatly reduced dose. I think (although I can't be 100% sure), that the issue for me was medication side effects and not the immune flair one can get when starting an antiviral. When I started valtrex I had a noticeable flair, followed by resolution of some symptoms. This felt different. Anyhow, do let us know how you are getting along with it.

Do you remember how long your startup flare lasted on Valacyclovir? Which symptoms does it help?

Sucks you weren't able to tolerate TAF. I really believe it'll help me. It probably already has, just can't tell since I'm sick right now.

 

[Shanti1]

Hi @Gzephyr

When I fist started the valacyclovir, I could only take 1g/day and experienced low grade fever and felt EXTREMELY fatigued, but my lymphadenopathy and sore throat improved. The increase in fatigue decreased my cognition, but my brain fog improved. Despite the side effects, I could feel that it was helping me.

The low grade fever lasted about 3 weeks and, if I remember correctly, by the end of 1 month, I was up to 1g tid. It took about 3 months for the side effects to resolve and now taking valacyclovir is like drinking water for me, I don't even notice it. However, if I don't take it, the EBV symptoms come back.

 

[Gzephyr]

Hi @Gzephyr

When I fist started the valacyclovir, I could only take 1g/day and experienced low grade fever and felt EXTREMELY fatigued, but my lymphadenopathy and sore throat improved. The increase in fatigue decreased my cognition, but my brain fog improved. Despite the side effects, I could feel that it was helping me.

The low grade fever lasted about 3 weeks and, if I remember correctly, by the end of 1 month, I was up to 1g tid. It took about 3 months for the side effects to resolve and now taking valacyclovir is like drinking water for me, I don't even notice it. However, if I don't take it, the EBV symptoms come back.

Glad you found some relief even if minor. That’s exactly how I felt on TDF and TAF. TDF’s lasted a week and TAF two weeks.

I’m over the flu/RSV now and don’t feel any viral flare up from the TAF. My lymph nodes are much much smaller than they were and I have a lot more energy so far. My brain fog seems to have improved as well. I walked close to 2 miles a few days ago which almost always triggers moderate PEM but I’ve yet to feel a thing.

I’ve had some aches and have felt a little off but I could attribute that to a short course of prednisone that I took for the flu…. Which I’m learning is terrible for CFSers. Definitely doesn’t feel like PEM, though.

So far so good!! Still not 100% convinced this is a real improvement but I haven’t been this optimistic in quite some time !

 

[Gzephyr]

*Update*

Recap; started TDF over 4 months ago, quit after a month to start TAF. Been on TAF for 3 months

Soooo…. Not much has changed. I had a great two or three weeks in late November/early Dec but I got into a mild flare, felt good again for a week, and then crashed hard after some activity.

I’m out of that crash but I’ve been dealing with on and off PEM for the last month or so. My sinuses and ears feel inflamed and I have moderate fatigue. Inflammation just seems to take my body over on these days… This has happened in the past before TAF where I would get weeks of inflammation so I don’t think it’s the drug causing it

I’m still gonna stick out the TAF and hope for changes in the future. That one document I read said that the big changes may happen after 4 months and on. If nothing happens by month 6 or 7 I might drop it

 

[cfs since 1998]

*Update*

Recap; started TDF over 4 months ago, quit after a month to start TAF. Been on TAF for 3 months

Soooo…. Not much has changed. I had a great two or three weeks in late November/early Dec but I got into a mild flare, felt good again for a week, and then crashed hard after some activity.

I’m out of that crash but I’ve been dealing with on and off PEM for the last month or so. My sinuses and ears feel inflamed and I have moderate fatigue. Inflammation just seems to take my body over on these days… This has happened in the past before TAF where I would get weeks of inflammation so I don’t think it’s the drug causing it

I’m still gonna stick out the TAF and hope for changes in the future. That one document I read said that the big changes may happen after 4 months and on. If nothing happens by month 6 or 7 I might drop it

Hello, are you still on TAF?

My thought is that if ME/CFS is caused by autoimmunity triggered by EBV, it might take a long time to reduce the viral load low enough to turn off the autoantibody production. Probably 1-2 years at least. I think this is why past antiviral trials have had underwhelming results, as most have been 6 months or less. Even after autoantibodies are eliminated, it may take another period of time to heal damaged tissues.

 

[cfs since 1998]

If anyone is still interested:

If I did the math right, a 25mg dose of TAF is equal to about 2,000mg of Valacyclovir (as far as Epstein-Barr is concerned). So 1.25mg of TAF is equal to about 100mg of Valacyclovir.

This could by why @Shanti1 and others found TAF to be hard to handle. If starting TAF, might be wise to start off with a tiny particle the size of a grain of sand and work your way up.

Another thing I found is that 1000mg doses of Valacyclovir do not come anywhere close to doubling the plasma concentration of a 500mg dose. In fact, doubling the dose only increases the concentration by 34%. Although Dr. Martin Lerner used 4g/day (1g every 6 hours), I suspect that half that dose for a slightly longer period of time could maybe work just as well and would have fewer side effects.

 

[Shanti1]

Hi @cfs since 1998,
I first tried TAF in June 2022, after a year on valacyclovir and could not tolerate even the tiniest dose. However about a week ago, after having some EBV symptoms after a more active day that usual, I decided to try TAF again. I took about a 16th of a tablet, and was amazed that I felt better and only had a slight fatigue as a side effect. I was not expecting this at all.

Since then, I have been taking an 8th of a tablet in daily with no problem and, I believe, even benefit. Why can I tolerate it now and not before? Possibly because I've been on valacyclovir for almost 3.5 years instead of 10 months, or because I cleared up a Candida krusei infection and have generally become more tolerant of things since then. Anyhow, I am really happy about this new development and will update after more time has passed to really assess the impact of the TAF. Hoping to work up to a full dose eventually.

 

[Gzephyr]

Hello, are you still on TAF?

My thought is that if ME/CFS is caused by autoimmunity triggered by EBV, it might take a long time to reduce the viral load low enough to turn off the autoantibody production. Probably 1-2 years at least. I think this is why past antiviral trials have had underwhelming results, as most have been 6 months or less. Even after autoantibodies are eliminated, it may take another period of time to heal damaged tissues.

I took a month break but I'm starting back today. It may take a long time for me to see benefits but I have acute viral replication as soon as I stop taking valacyclovir that isn't suppressed by TAF. That's disappointing because I was optimistic that TAF would be able to keep that from happening. So, judging off that, I didn't think TAF was really doing much.

 

[Gzephyr]

If anyone is still interested:

If I did the math right, a 25mg dose of TAF is equal to about 2,000mg of Valacyclovir (as far as Epstein-Barr is concerned). So 1.25mg of TAF is equal to about 100mg of Valacyclovir.

This could by why @Shanti1 and others found TAF to be hard to handle. If starting TAF, might be wise to start off with a tiny particle the size of a grain of sand and work your way up.

Another thing I found is that 1000mg doses of Valacyclovir do not come anywhere close to doubling the plasma concentration of a 500mg dose. In fact, doubling the dose only increases the concentration by 34%. Although Dr. Martin Lerner used 4g/day (1g every 6 hours), I suspect that half that dose for a slightly longer period of time could maybe work just as well and would have fewer side effects.

How did you come to the conclusion that 25mg TAF = 2000mg Valacyclovir? 2000mg valacyclovir a day would do a good enough job at suppressing viral flares for me but I still do best on 3000mg a day. 25mg sadly doesn't, like I mentioned above. Not trying to say you're wrong, just wanna understand!

Where did you read about the plasma concentration stats about Valacyclovir?

I'm gonna ask my doc to move me to 1 gram every 6 hrs instead of 8 hrs

 

[Gzephyr]

Note: I've recently realized that my vitamin D was low during my first stint on TAF. I've corrected that deficiency recently, confirmed by blood tests, and have been feeling noticeably better. I've tried getting at least 20 minutes of sun in peak daylight, a day.

I was also taking kratom a couple times a week which seems to have lowered my testosterone... so not really a great combo to fight off EBV. I've since cut out kratom almost completely unless I have a terrible day and need it

I'm also on cordyceps militaris now for its immune boosting and anti-viral effects. It gives me a nice energy and mood boost at the very least. Not sure how much it's helped EBV so far but this study makes it seem like it's very powerful against it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4303894/

 

[cfs since 1998]

How did you come to the conclusion that 25mg TAF = 2000mg Valacyclovir? 2000mg valacyclovir a day would do a good enough job at suppressing viral flares for me but I still do best on 3000mg a day. 25mg sadly doesn't, like I mentioned above. Not trying to say you're wrong, just wanna understand!

Where did you read about the plasma concentration stats about Valacyclovir?

I'm gonna ask my doc to move me to 1 gram every 6 hrs instead of 8 hrs

Hello,

The numbers I came up with are based on the pharmacokinetics of each from the package inserts and the sensitivity of EBV to each according to a few studies. Maybe you have another virus that is sensitive to Val but not Taf? Of course, without independent replication of Drosu's TAF-EBV research as well as controlled trials, we don't really know for sure if TAF (or TDF) or Val works better against EBV. I am sorry to hear that Taf is not helping you.

I have been reading about artesunate, and despite sounding promising, can't find any oral tablets for sale, only injections.

Valacyclovir 500mg peaks at 3.69 mcg/mL and 1000mg peaks at 4.96 mcg/mL (only 34% higher). However, my earlier post had a mistake as I only looked at peak concentration and not the total over time, which is called area under the curve. The area under the curve of a 1000mg dose is 59% higher than 500mg.

 

[Treeman]

@Gzephyr what level is your ME/CFS? Thanks.

 

[Gzephyr]

Hello,

The numbers I came up with are based on the pharmacokinetics of each from the package inserts and the sensitivity of EBV to each according to a few studies. Maybe you have another virus that is sensitive to Val but not Taf? Of course, without independent replication of Drosu's TAF-EBV research as well as controlled trials, we don't really know for sure if TAF (or TDF) or Val works better against EBV. I am sorry to hear that Taf is not helping you.

I have been reading about artesunate, and despite sounding promising, can't find any oral tablets for sale, only injections.

Valacyclovir 500mg peaks at 3.69 mcg/mL and 1000mg peaks at 4.96 mcg/mL (only 34% higher). However, my earlier post had a mistake as I only looked at peak concentration and not the total over time, which is called area under the curve. The area under the curve of a 1000mg dose is 59% higher than 500mg.

Thanks for the info

I’ve basically ruled out all other herpes viruses. I have a positive EBV pcr when I come off valacyclovir so I’m 99% sure it’s EBV.

 

[Gzephyr]

@Gzephyr what level is your ME/CFS? Thanks.

Moderate, I guess? I don’t know any other scale to list it on.

I can leave the house and walk short distances. I have mild PEM a lot of days, though. Some weeks I feel fairly ok. I’ve gotten worse long term each time I’ve tried to take an extended break from valacyclovir.. wasn’t smart of me but I haven’t done it in close to 2 years now

 

[Gzephyr]

I’ve restarted TAF as of today. It caused the same flare up as it did when I first started last November. It feels EXACTLY like how I do when I don’t take valacyclovir. Exactly like it. It just never progressed to being unbearable and it hasn’t caused mouth ulcers like it does being off of VAL

No clue if it’s an immune change from the medication or caused by a direct attack on EBV….

 

[Gzephyr]

Yet another update:

My doc agreed to bump my valacyclovir dose from 3 grams a day to 4 grams a day. I explained that since Valacyclovir has a short half life that maybe more frequent dosing would have some benefit. I flare up within 16 hours of being off of the drug so it's not too long after. Maybe there's some low grade replication that begins before I take my next dose of VAL? Moving to every 6 hours may clear this up, if that were to be the case.

I'll probably put a hold on starting back TAF, for now. Still getting monthly liver and kidney blood tests so no worries there. Everything was perfectly normal when I checked a week ago.

I see where studies, and anecdotes, claim that it takes long term dosing of antiviral to see any benefit but I truly see a benefit within a few hours if I haven't taken a dose within 16 hrs. I would be miserable without VAL. I pretty much have mono 24/7 while off of it.

 

[cfs since 1998]

I’ve restarted TAF as of today. It caused the same flare up as it did when I first started last November. It feels EXACTLY like how I do when I don’t take valacyclovir. Exactly like it. It just never progressed to being unbearable and it hasn’t caused mouth ulcers like it does being off of VAL

No clue if it’s an immune change from the medication or caused by a direct attack on EBV….

It's a paradox but beginning antiviral treatment does seem to cause a viral flare in many, if not most ME/CFS patients. I haven't been able to find a satisfying scientific explanation, mainly because no one has bothered to investigate it. It's often called a "Herxheimer reaction", but that is meant to refer to bacteria die-off. The closest analogy is HIV-related IRIS but that doesn't quite seem like the same thing either.

As more people with autoimmune diseases (like MS) try antivirals, it will be interesting to see if they also experience flare-ups when they first start them.

I had the biggest flare I've ever had when I started Valacyclovir 6 months ago. I only took it for a week but I never recovered from that flare, unfortunately. I wonder if I would have been better off if I kept taking it. I'm trying it again, starting in very small doses and working up.

I see where studies, and anecdotes, claim that it takes long term dosing of antiviral to see any benefit but I truly see a benefit within a few hours if I haven't taken a dose within 16 hrs. I would be miserable without VAL. I pretty much have mono 24/7 while off of it.

I speculate that's because you're basically upsetting the homeostatic balance whenever you stop a drug you've been taking awhile, or start a new one that you've never taken (or haven't taken for awhile). The brief period off Val takes your body out of homeostatis, and going back on it quickly brings it back. But, it takes a long time to shift to a new homeostatis level.

Thanks for keeping us updated, Gzephyr.